A Vacation Worth Remembering.

Louie is back in school. Since he's on a balanced school year, he gets six weeks in the summer and three for fall, winter and spring. The greatest pleasure I found during summer break was the opportunity to just be a mom. During the break, we still had some therapy and worked with him on maintaining current skills and helping him progress as much as possible.

It was actually the week long trip to the cabin in the Smokey Mountains that was the real reprieve. This is where truly, I was simply a mom. Louie was simply a kid. A son. A brother. We ate and swam and took long boat rides across the most sparkling deep green lake water I have seen.

The kids fought incessantly and wouldn't take a nap. Louie had lots off pee-pee accidents. Plenty of dirt, sweat and sticky sunscreen clung to the boys like a second skin. Bed times were late and at times, grouchiness overtook. But no picture schedules; in fact, no real schedules at all.

We sat in rocking chairs on our deck overlooking the mountains and valleys of the Smokeys and watched 10 different fireworks displays firing their shouts of independence and sparkling, fizzling, fading lights.

We didn't have hot water for three days. The cabin couch was slick with what only your imagination could produce as possibilities. Our hot tub didn't work half of the time. The pool was scummy and there were dying dandelions in plastic pots around the pool. The fire pit, described as a great place for the kids to roast marshmallows, was a pile of ashes surrounded by falling rock and broken down benches. Busch beer cans and cigarette butts littered the ground beneath our deck.

I wouldn't recommend this "resort" to anyone. Ever. Ever. I would, however, recommend a trip with your family to a place with a porch swing and rocking chairs. A place where the intensity of the solitude and silence (except for the occasional redneck hollering woo hoo in the next door cabin) feels divinely deafening. A place where you can see the big dipper and when it rains, pillows of fog lie sleepily in the wet and warm valleys.

What a fine time we had. We didn't have to battle with Ace as much to wear his clothes, as it didn't really matter. The boys had their first smores...cooked in the oven, not the fire pit, but nevertheless, they were still smores. Ace sang a rockin' rendition of Twinkle Twinkle Little Star, complete with guitar strumming. Very cute. Louie learned the word 'boat' and proceeded to say it over and over and over...and I remembered my blessings. My rich and immensely blessed life.

So go. If you can. Go somewhere and remember what it feels like to be without TV and Internet. And what it's like to have long conversations with your husband. After nine years of marriage I am still surprised about how much I don't know about Chris. And that's what vacation is about, isn't it?

It's not really the crystal clear pool or the hot water (which, of course, would have been nice). It's about time. Elusive, fleeting, precious time. All we have is time. But so often it feels it's what we have the least.

Go. Somewhere. Put your arms around time. Hold the day, the hour, the minutes and seconds, close. Don't look at your watch. Then set out on a search for tadpoles. Skip rocks. Go barefoot. Dance. Sing with your kids. And seek out the constellations in a starry sky. Even if you don't know about astronomy, try anyway. The stars have a way of showing you their patterns.

The Cicada.

Disclaimer:

This is a very sad, indulgent, dramatic, dark story. Read at your own risk.

If I'm going to have a blog, this story had to come. I had the "assignment" of writing it for my therapist. I'm doing some short-term therapy to deal with what he deems "traumatic grief". How personal. But if you're still reading my blog, you already know most everything. You've heard a lot of this before; some of the exact same lines, in fact.

I find it interesting that this time period, the period you're about to read about, has been the most difficult to process. Not the diagnosis. Just this 16 months of time when I watched my life from another place, another dimension, somewhere, maybe even from the sky. I underwent a metamorphosis. Not one of a caterpillar changing into a captivating butterfly. Instead, I was like a cicada leaving its shell behind. An exact replica; only empty inside.

And when the music comes to us

With its heavenly beauty

It brings us desolation

For when we hear it

We half remember

That lost native country

- Anne Porter

I am haunted by a photograph. It is a picture of me in the nursery eight months pregnant, arms cradling my belly, proudly smiling beside the crib we had put together that day. Seventeen months later, October 2^th, 2007, our son Lucas was diagnosed with Williams syndrome, a rare genetic disorder.

The pregnancy wasn’t typical; there were small problems throughout. Half way through the pregnancy he was diagnosed with intrauterine growth retardation (IUGR). But everyone kept saying it was all fine. He would be fine; some babies grow better on the outside. The last three weeks of the pregnancy I was going to the OB twice a week for “non-stress” tests to monitor the baby’s heartbeat during contractions; to see if the baby’s heart could “handle” contractions.

At 39 weeks, I was in for another stress test. My baby didn’t pass. My doctor’s nurse escorted me across the street to the hospital. The doctor had just told me we were having our baby that day. I called Chris at work, panicked. I called him again while he was rushing to the hospital. Crying because I had just been told I would be having an emergency c-section. I’d never even considered a c-section. The doctor (not mine) crudely asked “did you really think you would have a normal delivery with this baby?” Well, yes. Yes, I did. Chris barely made it in time to see Louie born. Full term, 4 lbs 14 oz.

In a haze of morphine, in a room of sterile equipment and blue paper sheets, the woman that had stood proudly in the nursery a month ago left. She went to a place where the broken go; a place where streets of coal were littered with trash, pills and bottles of red wine. The date of her departure: June 6, 2005 at 4:02 p.m.

Oddly, she could still see the scene play out below. As though she was sitting above it all, watching a horror movie without an ending; a movie that kept looping, playing over and over. From above, she watched, as her tears fell down and mixed with the rain falling on Vanderbilt Hospital as her son was rushed to the NICU.

I wish I could go back to that moment after his birth and gather her in my arms; that ghost of myself, for I knew she would never return the same. I would have held her tightly. I would whisper warnings in her ear that her heart would soon be shattered into a billion pieces. I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive. But in the meantime, to brace herself and brace herself hard. And to beware of the temptations of covering the pain with the vices that sat beside her on a dark cold road of coal.

The desperate mother took her son from doctor to doctor, from test to test, from needle to needle. They drew blood from a vein in his head since his arm veins were too small. The blood seeped into his white-blonde hair and dripped down his face.

From pediatrician to pediatrician, there were no answers. The endocrinologist gave us hope that maybe it was simply his hypothyroidism and that he would “catch-up”; that maybe he needed growth hormones. Another hospital bed. Another needle. Another test. She cried at every visit. She knew the staff thought she was insane. But she knew also there was more than a thyroid problem or growth hormone deficiency.

Louie wasn’t growing. Everyone celebrated when he gained two ounces. People bombarded her in places like Target asking why he was so small. Or guessing his age, “oh, is he 2 months?" “No,” she would reply. “He’s 7 months.”

She breastfeed, she bottle-fed, she used contraptions taped to her breasts to supplement with extra milk while nursing. The pediatrician recommended cereal earlier than a typical child would eat it.

Finally she found the right pediatrician. He suggested it was time to see a developmental pediatrician to look at possible genetic disorders. Genetic disorders. She had never considered a genetic disorder (looking back, I'm not sure why...it seems so obvious) and so she spent the night researching every genetic syndrome. That is when she found Williams syndrome and she knew. And her husband knew.

She called the nurse the next day, sobbing that he had Williams syndrome. She was dismissed. The lunatic mom strikes again?

The family visited the developmental pediatrician, who told them, just as everyone else had, he’s fine. He’ll catch up. The family asked if he would test for Williams syndrome. He agreed.

Three weeks later the pediatrician called and told the mother that she was a good researcher and that indeed, he had Williams syndrome. It was 5:00 p.m. and she was feeding Louie in his high chair. A phone call that will forever be burned into her being. She hung up the phone and called her neighbor in hysterics; she couldn't be alone and needed someone until Chris could get there.

He came quickly. And that’s when she returned from above, came back to the earth, hyperventilated and collapsed on the laundry room floor. Later that night she crawled into Louie's crib with him. She was back. She had an answer. And that answer was Williams syndrome. And the child, the boy she imagined she would have, the one every parent thinks they will have, was gone.

She came back to the ground, the earth, the soil beneath her feet once again. Louie didn’t go to the road of coal. But the imagined Louie died; the Louie without a genetic disorder died. And left Williams syndrome behind. Now there was an answer, an explanation, a truth. A truth that would empower the family to move on and to live together once again.

To Louie and Ace: Secrets and Mysteries

"A wonderful fact to reflect on, that every human creature is constituted to be that profound secret and mystery to every other." - Charles Dickens

Dear Louie and Ace, 

I write this letter to you today as a testament to how I feel about you.  The challenges and beauty; the triumphs and failures.  Our life.  As it is.  Today, April 15, 2009.

Recently, I painted a door black.  Plain, flat and pure black.  To my surprise, the color black is full of secrets and mysteries. Black isn't black.  It's not like white; white stays white.  But black, in paint form, moves and morphs into brilliant colors:  green, turquoise, blue, yellow, red. When applying it, it appears blue and then green and then suddenly it becomes the darkest of all colors, the color that can have a bad reputation.  The bad guys always wears black.  How very secretive and mysterious black is.  How very intriguing black is at it holds, quietly and silently, the things of which it is made.

Louie and Ace, I am proud to be your mother.  But I know you are not mine.  I've heard it said, children do not belong to you, they are only passing through.  How thankful I am that you're here with me, if only passing through.  I realize that slowly you will stop wanting "up, up, up" into my arms.  You already walk a step ahead.  I will no longer be your favorite person to be with.  And you will become mysterious men with secrets and thoughts I will never know.  

Oh Ace, you and your pairs of 22 autosomes. Your total of 46 chromosomes laced with the appropriate genes hanging like luminous Christmas lights stringing your internal make-up. But still, I find you are equally as mysterious as your brother with chromosomal structural differences. 

Ace, I don't understand why you change suddenly from a quiet artist, working quietly, introspective with markers and paper to a berserk marker-armed maniac out for attack...angrily biting off the marker heads and spitting them brazenly onto the floor. Oh yeah and by the way, just wondering why you put my bras around your neck. 

You received all chromosomes promised to most. You are my second first child. This typical development is new to me.  Ordinary to many; astonishing to me.  The details you see and mimic. The way you learn from your environment.  The way your fingers operate and manipulate objects.  Your attention to detail. Your memory. I am awed at human development in all it's perfection and natural progression. 

Louie, your attachment, well, that's putting it mildly, your lie-on-the-floor-and- scream-and-cry-episodes as I try to prepare your dinner until finally you are given the coveted Annie's Homegrown brand Mac-n-Cheese box. And now you've decided that's not enough.  You also want the powder cheese package that comes in the box as well.  It's because of the bunnies. There are lots of matching bunnies on the packaging of any of Annie's foods. And there are a million bunnies on the cheese packet. Which means the same goes for the Annie's bunny cracker boxes too.  Anything that matches...it's your new love, replacing street signs of olden days.  Matching bunnies.  How peculiar and cute.  

Louie, you are so interesting to me.  Your fascinations, your love of music and bunnies on cardboard food boxes.  Your love for cuddling and kissing.  Your passion for kites and balloons. Your uncanny ability to match objects and words.  The way you sneak away to tear books (much to my dismay); after all, books are your most beloved of all items.  I know you only do it because it's too much to resist.  That paper, the way it feels, sounds and looks when it tears.  A visual stem of paramount proportions.

I know I've written about this before but I am constantly impressed and amazed at this science experiment happening in my own home, before my eyes each day.  The sharp and piercing contrast between the two of you all because Louie is missing a few genes having to do with elastin.  

And because of you both, I am a Mom Scientist in my own right.  A mom who sees genetics at play everyday.  I am also a Mom Child Development Specialist.  I know more about child development than I ever thought possible.

As Parental Pseudo Scientist and Child Development Specialist, I always want to ask the question:  Are you two really more alike than you are different? Yes, you both have arms and legs and heads.  But it's difficult for me to see similarities beyond your physical features. Once someone asked me if you had the same father. Seriously? (BTW, yes, you do).  But even I can't recognize your homogeneity.

Louie, it's not fair you got shorted a couple of genes on chromosome 7. Lucky number 7; not so lucky.

And Ace, it's not fair that you will experience the inevitable embarrassment and questions that will come as you get older. The world simply isn't fair.  But as they say, who ever said life would be fair?  

My hope for our family is that we reflect on this life thing, and realize that for the most part it's pretty good.  Good things happen. This mysterious life, this secretive world, lovely, beyond words; as lovely as anything you could ever imagine.  Sometimes our lives do feel black.  But if we can remember what lies beneath that darkness, maybe we can lift ourselves up and back out into the world.  

How I marvel at you boys as you grow. How you both mystify and madden me.  I pray your secrets and mysteries will hold you and shine upon the world, beaming your gifts and magnetism to anyone and everyone who crosses your path.  The fortunate people crossing your path.  

P.S.  Not sure why that one paragraph is bigger than all the others.  I made the mistake of messing with the HTML.  

The Potty Post.

Potty weekend started like this.  The first picture.  Neat, clean, simple.  The second is the end of the weekend. Disgusting.  Dirty. Living our lives out of the bathroom.  

Anyone who has a toddler and writes a blog will write this post.  The potty post.  It's because this whole insane process is astonishing.  I've heard lots of potty training talk but haven't really tuned in or been able to relate when a friend tells me, with great (and deserved) pride and joy that he "peed on the potty this morning!".  "Oh yay!" I say back.  How exciting!" I feign enthusiasm.  

So now we're asking Louie to trade his diapers for BIG BOY UNDERWEAR.  I've heard many methods for how it has been done:  I trained her at 6 months.  Just let 'em run around naked outside. Let 'em run around anywhere naked.  I did it in three days.  I did it in one day.  It took me a year and a half.   Potty training is one of those things that I feel like everyone knows how to do except me

I recently found the frayed end of my diaper-changing rope.  Suddenly, I was completely disgusted by the whole bit of it.  Done!  Enough with the poop!  I ignorantly thought the potty training would help alleviate my exasperation.  Little did I know how much more intimate I was going to get with pee and poop.  All those "accidents"; such a sweet way to describe poo-poo in underwear. Try taking those off while keeping the "accident" contained.  Difficult if not impossible.  

Never could I imagine the excitement and thrill of a successful potty trip.  "Hip Hip Hooray!" I say! Really, I shout "Hip Hip Hooray, Louie!  You peed on the potty!" as I jump all around, pumping my arms in the air, doing the potty dance, singing the potty song (Yay Louie, Yay Louie, Yay Louie, YAY!).  All I can say is it works, all of this Team Potty cheer leading.  Today, including myself, there were four women cheering and applauding his toileting skills.  He kept signing for "more"..."more" applause.  "More" cheering.  A potty party!

Isn't it cute, the word potty?  They get to call it a potty.  So when does it become a toilet? When do you graduate from "honey, go use the potty" to "DO YOU NEED TO PEE"?  The word "potty" has passed from my lips no less than a thousand times over the past week.  The first weekend was brutal with the number of hours our family of four logged in the downstairs half bath.  There were always at least three of us in there at once. Certainly you know Ace is right there with us, without fail, every time.  And I mean right there. What child wouldn't be there, what with all the bubble blowing, book reading, Old MacDonald singing, clapping and "yaying"? Are you kidding me?  What could possibly be more fun? 

We've had good days and bad days.  Wet days, dry days, dirty days, held "it" all morning days (almost called the doctor after he held it for 4 hours!), he will never get it days and hopeful days.  But now, it's obvious, there is hope.  He does get it.  He absolutely understands!

It was Louie's teacher's idea to start potty training.  The average age for a child with William's syndrome to become successfully potty trained is age four.  Louie will be four in June.  Louie is lower functioning than most with WS.  I therefore deduced that Louie wouldn't be ready until five.  I even prepared myself for much, much later.  But mostly, I didn't think about it.  My expectations were low.  And don't people usually live up to their expectations?

I have been protecting myself by not thinking about the future and by not believing in Louie and his capabilities.  My immediate thought about potty training was there is no way he's ready but sure, we can try and fail.  Then we'll try again later.  I wasn't invested.  Even after we started I was apprehensive.  

And now, after seeing real success, I'm starting to believe.  I'm not beating myself up too much about this but I feel compelled to examine how my protective reflexes have failed me. By keeping my expectations lowered, I will feel less disappointment, I will avoid the despair of failure? No.  But I will in the process hold Louie back.  

I realize I may be facing a serious loss of faith and the ability to believe in the intangible. Suddenly, science has taken over, my thoughts safely contained within questions such as is there any research to support that?  Do we have any medical evidence to suggest need for growth hormones? Do you have the updated medical guidelines? Somewhere along the road, faith eroded itself from my body, leaving a carved out space where apathy and doubt now live.  

The good thing about this realization is that it's not too late to invite faith back to live with me, to fill the spaces and holes, to take over the dark and to shed light, to start believing again. I want that.  I want to believe in life again.  I want to believe in miracles.  But mostly, I want to believe that Louie's potential is far and wide; his life valued and boundless, mysterious and wild. And that he will wear boxer briefs.  Not diapers.

Magical Thinking.

I'm reading  Joan Didion's "The Year of Magical Thinking."  It's about her husband's unexpected death during the same period of time her daughter was in ICU with septic shock.  I'm sure you're wondering why I'm reading something so depressing.  And that's just the thing, as Didion points out, we hide our grief because it's ugly.  It's too depressing.  We're uncomfortable with it.  So, those who are experiencing pain, loss and grief, well, they too know the rules and quietly slip away behind a locked bedroom door.  

We shy away from those who are grieving.  We don't know what to say or do. So, we say things like:

- Oh, you'll have another baby

- He'll be fine...he'll catch up

- The implants look real 

- This was given to you because God knew you could handle it

- You will learn patience from this

- It was her time to go

- He's in a better place

- An important lesson will come of this

- There must have been something wrong with the baby, so it's a good thing

- Time will heal

 Some of these words are true, some of them are horrible but usually it's not the words grieving people need.  There are no perfect words.  You will never find the right words because they do not exist.  

I believe it's more about the being there.  And giving that person the freedom to grieve, to tell their story, to cry, to talk about it or to not talk about it.  Maybe help them realize that pain does not equal weakness.

Didion describes grief in the following passage:

"Grief is different.  Grief has no distance.  Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life.  Virtually everyone who has experienced grief mentions this phenomenon of "waves"."

Oh, yes, the waves; the waves crashing down with all their weight.  And the gentle salty waves that constantly wash up against the still raw nerve that runs through you.  Sometimes I truly feel like everything is completely fine. And that is happening more and more - a good thing.  I think to myself, oh this is easy, no big deal at all. Special needs, Williams syndrome, whatever.  I have this under control.  And then, there it is...like an electrical shock that comes on quickly and shakes my bones and zaps any notion of control I thought I had. 

That's the scary part about grief; that you never really know when one of those "waves" might break on you.  I'm fortunate to have a friend who also has a child with special needs. She feels like home.  We say things we would never say to anyone else.  We stand in the park crying because we started talking about our diagnosis stories.  That's rare...that we cry, by the way (see...great example of shame for feeling sad, for crying, for grieving!).  Our eyes get watery on occasion, usually when talking about the future, that scary place for parents with kids like ours; but more often than not, we are watching our kids play and talking about recipes or something simple and ordinary.  But on occasions when things are anything but ordinary, it's nice to have a friend who really understands all the intrinsic challenges of parenting a child like Louie.  She provides an anchor when I need it most.  

The day we received Louie's diagnosis was the day I began my own journey of grief.  And a journey it is.  I vividly remember the date (October 2, 2006), time (5:05), what I was doing (feeding Louie dinner), who I called (my friend who lived up the street; I needed someone there until Chris could get home).  Chris was able to get home quickly.  I remember how I hyperventilated and breathed into a paper bag and collapsed on the laundry room floor.  I don't remember anything after that.  Things just went dark.  

I also grieve for the person I was before that day, the person who endured 16 months of wondering what was wrong with my child.  After having Louie, I was strangely fascinated with pregnant women and I wanted to talk about my own pregnancy and labor over and over.  I don't know why; maybe I thought the more I told my story, maybe I could change the ending somehow.  If I could just go back, I could eat more and maybe then he would have grown bigger in the womb, or not needed an emergency c-section, and not weighed 4lbs 14 oz at full-term.  Maybe I could go back and fix things; magically give Louie the genes he needed, the 7q11.23 region of chromosome #7.  

I haven't finished the book yet.  But just its title, "The Year of Magical Thinking", evokes such emotion and imagination.  Magical thinking.  I wonder how Didion came up with her title and what exactly it means to her.  

For me, experiencing grief has opened the door for magical thinking.  Grief has changed me; molded me into someone I wouldn't have recognized five years ago.  It has made me face my fears and run from them at the same time.  My spirit has been broken; my life unhinged.  But again and again, it is rebuilt, restored and oftentimes, magical.   

You know that bag I said I hyperventilated into?  That's a picture of it above.  I later wrote the word "Breathe" on it and dated it with the day we received the diagnosis.  I plan to destroy it someday.  I'm not ready yet.  I still need it for something; just not sure what.  Proof that October 2, 2006 really happened? Something tangible, something that I can touch, something less ambiguous and painful than those clinical cold words like syndrome, retarded and health issues.  

I don't know.  Maybe I keep it around simply as a reminder to breathe.  To breathe and hold on to the magical moments.   

Happy New Year?

January is a rough one. Even for someone who likes winter, it's hard. The big build up to Christmas and all the frenzy surrounding it inevitably leads to a crash. In a blink of an eye, it's over and we're left with a mess to clean up. January sets in and it's overcast, highs only in the 40's every day on the 10-day weather forecast. For us Southerners, that's cold, people.

Then you've got this big new year to live up to. Even if you made not a resolution one, I know that there is still a part of you that approaches the new year as a new beginning; the year you'll organize the attic, the year you'll be nice, the kind of nice that people comment when you leave the room "she's soooooo nice", and of course, this is the year you will conquer world hunger and cure AIDS. Seriously. That's what we do to ourselves. All in the name of reinvention. How we (I?) love reinvention.  

Whether you actually write down resolutions or scoff at those who do or have signed up to live Oprah's Best Life, it's virtually impossible to resist the past all folded up into a neat little package, a year, last year, and a fresh year lies ahead, clean and fresh, a new dawn, beckoning to you to come, start anew. So we go and make these huge, nonspecific "resolutions", grand ideas to become the person we were meant to be. Why? Why do we antagonize ourselves so?

Five failed resolutions later, gray skies and stale Christmas decorations littered about, here we are in the bleak days of mid-January. Oh, and by the way, if you are one of them, with the lights still up and ON, the droopy bow on your crooked wreath, your blow-up Rudolph that is no longer blown up, lying sadly on your front lawn, for sanity's sake, I beg you, take them down. Just pack them up. Put them away. Be done with it! There's nothing that contributes more to January doldrums than these holiday leftovers.

I had planned to blog about some Louie and Ace adventures but maybe next time. They've been endlessly entertaining. But I'm spent. All the depressing thoughts about January has gotten me down. Until next time...hope this didn't bum you out! Happy New Year everyone! May this be your best year yet.